33 found
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  1.  65
    A Personalized Patient Preference Predictor for Substituted Judgments in Healthcare: Technically Feasible and Ethically Desirable.Brian D. Earp, Sebastian Porsdam Mann, Jemima Allen, Sabine Salloch, Vynn Suren, Karin Jongsma, Matthias Braun, Dominic Wilkinson, Walter Sinnott-Armstrong, Annette Rid, David Wendler & Julian Savulescu - 2024 - American Journal of Bioethics 24 (7):13-26.
    When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that even if such (...)
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  2.  84
    Standards of practice in empirical bioethics research: towards a consensus.Jonathan Ives, Michael Dunn, Bert Molewijk, Jan Schildmann, Kristine Bærøe, Lucy Frith, Richard Huxtable, Elleke Landeweer, Marcel Mertz, Veerle Provoost, Annette Rid, Sabine Salloch, Mark Sheehan, Daniel Strech, Martine de Vries & Guy Widdershoven - 2018 - BMC Medical Ethics 19 (1):68.
    This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...)
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  3.  59
    In Defense of a Social Value Requirement for Clinical Research.David Wendler & Annette Rid - 2017 - Bioethics 31 (2):77-86.
    Many guidelines and commentators endorse the view that clinical research is ethically acceptable only when it has social value, in the sense of collecting data which might be used to improve health. A version of this social value requirement is included in the Declaration of Helsinki and the Nuremberg Code, and is codified in many national research regulations. At the same time, there have been no systematic analyses of why social value is an ethical requirement for clinical research. Recognizing this (...)
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  4.  64
    A framework for risk-benefit evaluations in biomedical research.Annette Rid & David Wendler - 2011 - Kennedy Institute of Ethics Journal 21 (2):141-179.
    One of the key ethical requirements for biomedical research is that it have an acceptable risk-benefit profile (Emanuel, Wendler, and Grady 2000). The International Conference of Harmonization guidelines mandate that clinical trials should be initiated and continued only if “the anticipated benefits justify the risks” (1996). Guidelines from the Council for International Organizations of Medical Sciences state that biomedical research is acceptable only if the “potential benefits and risks are reasonably balanced” (2002). U.S. federal regulations require that the “risks to (...)
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  5.  63
    Treatment Decision Making for Incapacitated Patients: Is Development and Use of a Patient Preference Predictor Feasible?Annette Rid & David Wendler - 2014 - Journal of Medicine and Philosophy 39 (2):130-152.
    It has recently been proposed to incorporate the use of a “Patient Preference Predictor” (PPP) into the process of making treatment decisions for incapacitated patients. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Including a PPP in the shared decision-making process between clinicians and surrogates has the potential to better realize important ethical goals for making treatment decisions (...)
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  6. Justice and Procedure: How does “accountability for reasonableness” result in fair limit-setting decisions?Annette Rid - 2009 - Journal of Medical Ethics 35 (1):12-16.
    Norman Daniels’ theory of justice and health faces a serious practical problem: his theory can ground the special moral importance of health and allows distinguishing just from unjust health inequalities, but it provides little practical guidance for allocating resources when they are especially scarce. Daniels’ solution to this problem is a fair process that he specifies as "accountability for reasonableness". Daniels claims that accountability for reasonableness makes limit-setting decisions in healthcare not only legitimate, but also fair. This paper assesses the (...)
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  7.  60
    Public Reasoning and Health-Care Priority Setting: The Case of NICE.Benedict Rumbold, Albert Weale, Annette Rid, James Wilson & Peter Littlejohns - 2017 - Kennedy Institute of Ethics Journal 27 (1):107-134.
    Health systems that provide for universal patient access through a scheme of prepayments—whether through taxes, social insurance, or a combination of the two—need to make decisions on the scope of coverage that they secure. Such decisions are inherently controversial, implying, as they do, that some patients will receive less than comprehensive health care, or less than complete protection from the financial consequences of ill-heath, even when there is a clinically effective therapy to which they might have access.Controversial decisions of this (...)
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  8.  39
    A new method for making treatment decisions for incapacitated patients: what do patients think about the use of a patient preference predictor?David Wendler, Bob Wesley, Mark Pavlick & Annette Rid - 2016 - Journal of Medical Ethics 42 (4):235-241.
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  9. Research led by participants: a new social contract for a new kind of research.Effy Vayena, Roger Brownsword, Sarah Jane Edwards, Bastian Greshake, Jeffrey P. Kahn, Navjoyt Ladher, Jonathan Montgomery, Daniel O'Connor, Onora O'Neill, Martin P. Richards, Annette Rid, Mark Sheehan, Paul Wicks & John Tasioulas - 2016 - Journal of Medical Ethics 42 (4):216-219.
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  10.  30
    Judging the Social Value of Health-Related Research: Current Debate and Open Questions.Annette Rid - 2020 - Perspectives in Biology and Medicine 63 (2):293-312.
    Several influential ethical guidelines and frameworks endorse the view that research with human participants is ethically acceptable only when it has “social value,” meaning that it generates knowledge which can be used to benefit society. For example, the Nuremberg Code requires that medical experiments on human beings “yield fruitful results for the good of society, unprocurable by other methods or means of study”. The Council for International Organizations of Medical Sciences guidelines hold that “health-related research with humans... must have social (...)
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  11.  57
    Can We Improve Treatment Decision-Making for Incapacitated Patients?Annette Rid & David Wendler - 2010 - Hastings Center Report 40 (5):36-45.
    When patients cannot make their own treatment decisions, surrogates typically step in to do it for them. Surrogate decision‐making is far from ideal, of course, as the surrogate may not know what the patient prefers or what best promotes her interests. One way to improve it would be to arm surrogates with information about what patients in similar circumstances tend to prefer, allowing them to make empirically grounded predictions about what their patient would want.
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  12.  28
    (1 other version)What is Enough?: Sufficiency, Justice, and Health.Carina Fourie & Annette Rid (eds.) - 2016 - Oxford University Press.
    What is a just way of spending public resources for health and health care? Several significant answers to this question are under debate. Public spending could aim to promote greater equality in health, for example, or maximize the health of the population, or provide the worst off with the best possible health. Another approach is to aim for each person to have "enough" so that her health or access to health care does not fall under a critical level. This latter (...)
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  13.  35
    Judging the social value of controlled human infection studies.Annette Rid & Meta Roestenberg - 2020 - Bioethics 34 (8):749-763.
    In controlled human infection (CHI) studies, investigators deliberately infect healthy individuals with pathogens in order to study mechanisms of disease or obtain preliminary efficacy data on investigational vaccines and medicines. CHI studies offer a fast and cost‐effective way of generating new scientific insights, prioritizing investigational products for clinical testing, and reducing the risk that large numbers of people are exposed to ineffective or harmful substances in research or in practice. Yet depending on the pathogen, CHI studies can involve significant risks (...)
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  14. Can informed consent to research be adapted to risk?Danielle Bromwich & Annette Rid - 2015 - Journal of Medical Ethics 41 (7):521-528.
    The current ethical and regulatory framework for research is often charged with burdening investigators and impeding socially valuable research. To address these concerns, a growing number of research ethicists argue that informed consent should be adapted to the risks of research participation. This would require less rigorous consent standards in low-risk research than in high-risk research. However, the current discussion is restricted to cases of research in which the risks of research participation are outweighed by the potential clinical benefits for (...)
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  15.  21
    Evaluating the risks of public health programs: Rational antibiotic use and antimicrobial resistance.Annette Rid, Jasper Littmann & Alena Buyx - 2019 - Bioethics 33 (7):734-748.
    Existing ethical frameworks for public health provide insufficient guidance on how to evaluate the risks of public health programs that compromise the best clinical interests of present patients for the benefit of others. Given the relevant similarity of such programs to clinical research, we suggest that insights from the long‐standing debate about acceptable risk in clinical research can helpfully inform and guide the evaluation of risks posed by public health programs that compromise patients’ best clinical interests. We discuss how lessons (...)
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  16.  32
    Substantiating the Social Value Requirement for Research: An Introduction.Annette Rid & Seema K. Shah - 2017 - Bioethics 31 (2):72-76.
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  17.  34
    Do patients want their families or their doctors to make treatment decisions in the event of incapacity, and why?David Wendler, Robert Wesley, Mark Pavlick & Annette Rid - 2016 - AJOB Empirical Bioethics 7 (4):251-259.
    Background: Current practice relies on patient-designated and next-of-kin surrogates, in consultation with clinicians, to make treatment decisions for patients who lose the ability to make their own decisions. Yet there is a paucity of data on whether this approach is consistent with patients' preferences regarding who they want to make treatment decisions for them in the event of decisional incapacity. Methods: Self-administered survey of patients at a tertiary care center. Results: Overall, 1169 respondents completed the survey (response rate = 59.8%). (...)
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  18.  38
    Setting risk thresholds in biomedical research: lessons from the debate about minimal risk.Annette Rid - 2014 - Monash Bioethics Review 32 (1-2):63-85.
    One of the fundamental ethical concerns about biomedical research is that it frequently exposes participants to risks for the benefit of others. To protect participants’ rights and interests in this context, research regulations and guidelines set out a mix of substantive and procedural requirements for research involving humans. Risk thresholds play an important role in formulating both types of requirements. First, risk thresholds serve to set upper risk limits in certain types of research. Second, risk thresholds serve to demarcate risk (...)
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  19.  51
    Ethics: Would you sell a kidney in a regulated kidney market? Results of an exploratory study.Annette Rid, Lucas Bachmann, Vincent Wettstein & Nikola Biller-Andorno - 2009 - Journal of Medical Ethics 35 (9):558-564.
    Background: It is often claimed that a regulated kidney market would significantly reduce the kidney shortage, thus saving or improving many lives. Data are lacking, however, on how many people would consider selling a kidney in such a market. Methods: A survey instrument, developed to assess behavioural dispositions to and attitudes about a hypothetical regulated kidney market, was given to Swiss third-year medical students. Results: Respondents’ median age was 23 years. Their socioeconomic status was high or middle. 48 considered selling (...)
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  20.  24
    Patients’ Priorities for Surrogate Decision-Making: Possible Influence of Misinformed Beliefs.E. J. Jardas, Robert Wesley, Mark Pavlick, David Wendler & Annette Rid - 2022 - AJOB Empirical Bioethics 13 (3):137-151.
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  21. Universal Health Coverage, Priority Setting and the Human Right to Health.Benedict Rumbold, Octavio Ferraz, Sarah Hawkes, Rachel Baker, Carleigh Crubiner, Peter Littlejohns, Ole Frithjof Norheim, Thomas Pegram, Annette Rid, Sridhar Venkatapuram, Alex Voorhoeve, Albert Weale, James Wilson, Alicia Ely Yamin & Daniel Wang - 2017 - The Lancet 390 (10095):712-14.
    As health policy-makers around the world seek to make progress towards universal health coverage, they must navigate between two important ethical imperatives: to set national spending priorities fairly and efficiently; and to safeguard the right to health. These imperatives can conflict, leading some to conclude that rights-based approaches present a disruptive influence on health policy, hindering states’ efforts to set priorities fairly and efficiently. Here, we challenge this perception. We argue first that these points of tension stem largely from inadequate (...)
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  22.  29
    Will a Patient Preference Predictor Improve Treatment Decision Making for Incapacitated Patients?Annette Rid - 2014 - Journal of Medicine and Philosophy 39 (2):99-103.
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  23.  22
    The 2008 Declaration of Helsinki — First among Equals in Research Ethics?Annette Rid & Harald Schmidt - 2010 - Journal of Law, Medicine and Ethics 38 (1):143-148.
    The World Medical Association's Declaration of Helsinki is one of the most important and influential international research ethics documents. Launched in 1964, when ethical guidance for research was scarce, the Declaration comprised eleven basic principles and provisions on clinical research. The document has since evolved to a complex set of principles, norms, and directions for action of varying degrees of specificity, ranging from specific rules to broad aspirational statements. It has been revised six times in an effort to maintain its (...)
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  24.  18
    The Social Value Misconception in Clinical Research.Jake Earl, Liza Dawson & Annette Rid - forthcoming - American Journal of Bioethics.
    Clinical researchers should help respect the autonomy and promote the well-being of prospective study participants by helping them make voluntary, informed decisions about enrollment. However, participants often exhibit poor understanding of important information about clinical research. Bioethicists have given special attention to “misconceptions” about clinical research that can compromise participants’ decision-making, most notably the “therapeutic misconception.” These misconceptions typically involve false beliefs about a study’s purpose, or risks or potential benefits for participants. In this article, we describe a misconception involving (...)
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  25.  42
    Informed consent for controlled human infection studies in low‐ and middle‐income countries: Ethical challenges and proposed solutions.Vina Vaswani, Abha Saxena, Seema K. Shah, Ricardo Palacios & Annette Rid - 2020 - Bioethics 34 (8):809-818.
    In controlled human infection studies (CHIs), participants are deliberately exposed to infectious agents in order to better understand the mechanism of infection or disease and test therapies or vaccines. While most CHIs have been conducted in high‐income countries, CHIs have recently been expanding into low‐ and middle‐income countries (LMICs). One potential ethical concern about this expansion is the challenge of obtaining the voluntary informed consent of participants, especially those who may not be literate or have limited education. In some CHIs (...)
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  26.  34
    Ethics of controlled human infection studies: Past, present and future.Seema K. Shah & Annette Rid - 2020 - Bioethics 34 (8):745-748.
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  27.  23
    The Goals of Research During an Epidemic.Annette Rid - 2015 - American Journal of Bioethics 15 (4):47-50.
  28.  65
    Affordability and Non-Perfectionism in Moral Action.Benedict Rumbold, Victoria Charlton, Annette Rid, Polly Mitchell, James Wilson, Peter Littlejohns, Catherine Max & Albert Weale - 2019 - Ethical Theory and Moral Practice 22 (4):973-991.
    One rationale policy-makers sometimes give for declining to fund a service or intervention is on the grounds that it would be ‘unaffordable’, which is to say, that the total cost of providing the service or intervention for all eligible recipients would exceed the budget limit. But does the mere fact that a service or intervention is unaffordable present a reason not to fund it? Thus far, the philosophical literature has remained largely silent on this issue. However, in this article, we (...)
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  29.  46
    Prisoners as research participants: current practice and attitudes in the UK.Anna Charles, Annette Rid, Hugh Davies & Heather Draper - 2016 - Journal of Medical Ethics 42 (4):246-252.
    The use of prisoners as research participants is controversial. Efforts to protect them in response to past exploitation and abuse have led to strict regulations and reluctance to involve them as participants. Hence, prisoners are routinely denied the opportunity to participate in research. In the absence of comprehensive information regarding prisoners’ current involvement in research, we examined UK prisoners’ involvement through review of research applications to the UK National Research Ethics Service. We found that prisoners have extremely limited access to (...)
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  30.  52
    Kommentar I zum Fall: „Heimlicher Transfer von HIV-Medikamenten nach Afrika“.Tanja Krones, Christine Angelika Rüegg, Huldrych Fritz Günthard, Annette Rid & Verina Wild - 2012 - Ethik in der Medizin 24 (1):59-61.
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  31.  29
    (1 other version)Individual and public interests in clinical research during epidemics: a reply to Calain: In response to: Calain P. The Ebola clinical trials: a precedent for research ethics in disasters.Annette Rid - 2017 - Journal of Medical Ethics Recent Issues 44 (1):11-12.
    In his stimulating target article, 1 Philippe Calain discusses how the traditional ethical framework for clinical research was challenged during the 2013–2016 Ebola epidemic in West Africa. One of his key claims is that conventional research ethics did not have the resources to address the ‘profound tension’ 1, between individual and public interests in clinical research during this epidemic. I agree with this claim, but would like to provide a modified argument in its support. As Calain points out, although a (...)
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  32.  39
    Joachim Boos, Reinhard Merkel, Heiner Raspe, Bettina Schöne-Seifert (Hrsg) (2009) Nutzen und Schaden aus klinischer Forschung am Menschen. Abwägung, Equipoise und normative Grundlagen: Deutscher Ärzteverlag, Köln, 188 Seiten, 39,95 €, ISBN 978-3-7691-0589-6.Annette Rid - 2010 - Ethik in der Medizin 22 (2):167-168.
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  33.  17
    The Challenge of Selecting Participants Fairly in High-Demand Clinical Trials.Annette Rid, Saskia Hendriks & Alexander A. Iyer - 2020 - American Journal of Bioethics 20 (2):35-38.
    Volume 20, Issue 2, February 2020, Page 35-38.
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